Monday, 29 October 2012

I wrote Carter's story (below) to be included with others on the Kilometres for Communication website. All the stories on the site are written by people from across Canada who communicate differently.

I've shared lots of info about my son on this blog so you wouldn't think I'd have a problem putting something together, but I wasn't sure I could capture what Carter is all about in just a few paragraphs. I tried to mention some of his strengths and interests, and of course, a little of his history. I didn't want to focus solely on his communication as that's just one part of his story, but in all fairness it is a fairly big part at this stage in his life as we try to support him in developing his communication skills.

To help get my creative juices flowing, I thought back to a short bio I wrote about myself that I've used when submitting pieces of my writing to various contests and websites. I thought about the things I highlighted about myself (past experiences, interests, family, etc.).

Then I thought about my bio on Twitter. You're given a mere 160 characters to define who you are so you have no choice but to keep it short and sweet and to the point. As a warm-up I decided to write a 160 character bio for Carter:

I really wanted to add, Apple of his Mom's eye, but, that would have been too long for the 160 character limit.

After much contemplation, here's what I finally put together for Carter's story:

Carter was born with Pierre Robin Sequence (small lower jaw) which resulted in a cleft palate. Although he came home from the hospital three days after his birth, Carter was admitted to McMaster Children's Hospital five weeks later. He was challenged by feeding and airway issues and he struggled to gain weight. A fighter from the get go, Carter returned home after a two week hospital stay, and with medical interventions to help with his feeding and breathing issues, he continued to thrive.

Just before his first birthday, Carter showed the same resilience when he had his cleft palate surgically repaired.

My husband and I were prepared for the increased likelihood that Carter would need speech therapy. We knew it was probable that Carter would have articulation problems when his speech developed (common in children born with a cleft palate). What we weren't prepared for was his need for occupational therapy, physiotherapy, and behaviour therapy as well. Carter didn't follow the typical path of development and he required intervention in all areas.

Regular speech therapy sessions became part of a weekly routine, not because of articulation problems but, because Carter had a severe language delay. Years of therapy would prove to be futile as speech never came for Carter.

Instead, he communicated with facial expressions and eventually sign language and gestures. We marvelled at his easy-going nature and wondered how he wasn't more frustrated when he was not readily able to communicate his wants and needs. But he was, for the most part, a content little guy, happy to abandon his first choice and move on to something else if what he wanted wasn't made available to him.

It was a struggle coming to terms with Carter's lack of speech development. The doctor explained that it was not related to the Pierre Robin Sequence or cleft palate. Although she mentioned it was likely related to a 'yet to be discovered' genetic syndrome, she was unable to tell us why Carter's wasn't talking.

A speech pathologist from the U.S. diagnosed Carter with Childhood Apraxia of Speech and dysarthria, but there was still no explanation as to why he had these conditions. Eventually the 'Why' questions were overshadowed by our concerns around Carter's lack of functional communication. We needed to give Carter a way to express himself so that he would be understood by everyone.

We bought Carter a Nintendo DS and started him using a speech program that ran on the device (this was just before iPads became available). He loved it! I programmed various things into the device and Carter was able to label items and take part in basic interactions. It was a great introduction to a simple speech generating device for Carter but he quickly outgrew its capacity. Eventually we were able to get him a Vantage Lite speech device which he has been using for almost two years now (since December 2010).

We continue to watch with excitement as Carter's communication skills develop. A natural goofball, Carter's sense of humour has blossomed with his new found capability to speak more freely with his talker. He tells jokes, gets into potty humour with his brother and sister (underwear anyone?) and he loves to comment and contribute to conversations as best as he can. There's still a lot he needs to learn in terms of language skills but he's proven his capability for learning and I'm confident he'll continue to make progress.

In the meantime, Carter is likely to be found with his younger brother and sister doing one of his many favourite things, like splashing in the pool in the summer, downhill skiing in the winter, perusing books, playing cars or hanging out with his partner in crime, Bentley (service dog extraordinaire).

Friday, 12 October 2012

Suzie McNeil's lyrics from her song, Believe have been dancing through my head since Tuesday night. They are a reminder that although there have been plenty of times when I've felt uncertain about Carter's future, I've never stopped believing that he will someday communicate functionally.

On Tuesday night I gathered with a group of parents and professionals to take part in Holland Bloorview's screening of the movie, Certain Proof: A Question of Worth.The movie is a feature documentary about three children living with significant communication and physical disabilities, who struggle against the public schools in an emotional battle to prove their worth.

*Take a look at the trailer:

After viewing the movie, I participated in a panel discussion and was given the opportunity to speak.

I introduced myself to the audience and shared that my 9 year old son, Carter uses a Vantage Lite speech device to communicate. I didn't speak of the challenges we've faced with the public school system. I didn't speak of the struggles we've had trying to find support for Carter with his device.

Instead I reflected on some things from the movie that truly resonated with me: the loss of parental dreams and the challenge of replacing those dreams, the concern that children who communicate differently are often ignored, and the importance of making sure those childrens' voices get heard. Carter, and others like him, should be given every opportunity to learn to communicate functionally and to practise their right to communicate.

Looking back on Tuesday night's discussion, I wish I'd spoken to the audience about my belief in Carter's abilities and about how important it is to believe in your child and not give up hope.

When one of the moms in the movie broke down crying after having taken her son, Josh to a speech clinic in North Carolina, my own tears pooled and threatened to flow. This mom believed with all her heart that her little boy had something to say and that he was capable of communicating and learning, but no one else believed it. She went to North Carolina in search of 'proof,' something that is so often required from kids with communication challenges, proof that Josh had something to offer.

The speech therapist confirmed that indeed her son was a bright little boy with communicative intent and the ability to learn. When given the right tools, a little guidance, some motivating activities and lots of time, her son, Josh 'proved' that his mom had been right all along, he really was 'in there.' She wasn't crazy after all.

When Josh engaged in activities with the speech therapist, I wanted to cheer. I felt like I was reliving those moments with Carter all over again - the doubts about his language progression, the wondering if there would ever be more to his communication than a few simple signs and gestures, it all came flooding back to me.

I get what it's like to have to 'prove' to others that your child has a lot to offer. I've experienced the feeling of being alone in the belief that there's a lot more going on in your child's head than he's able to demonstrate.

This movie illustrates the unfortunate truth, that kids with complex communication needs are held to a different standard than their typical peers. They continually have to prove themselves.

If only there were some way to relieve them of this burden of proof, to create greater acceptance and opportunity for them, to get others to believe in them like we, their parents do.To those who doubt our kids, I leave you with this...

You will see things you'll never forget...if you just believe...

Our kids (and their parents) can move mountains with dreams!

Be sure to read Louise Kinross' blog post about Certain Proof on Bloom:

Saturday, 6 October 2012

Here is another piece I wrote for the Waterloo Region Family Network (WRFN) blog a couple of years ago. Apologies to those of you who have already seen it.

The Child Who Never Grew by Pearl S. Buck 2nd addition, Woodbine House 1992, 107 pages.

The first cry from my heart, when I knew that she would never be anything but a child, was the age-old cry that we all make before inevitable sorrow: “Why must this happen to me?”

So begins The Child Who Never Grew,a story written by the Pulitzer Prize and Nobel Prize winning author, Pearl S. Buck. The book is based on a magazine article Buck wrote for the May 1950 edition of Ladies Home Journal about raising her daughter, Carol who was born in 1920 with phenylketonuria (PKU). PKU is the inability to metabolize specific amino acids which can result in problems with brain function. As stated in the introduction, written by Martha M. Jablow, “Buck was the first prominent person to acknowledge publicly a child with mental retardation.”

The 2nd Edition of The Child Who Never Grew not only contains Buck’s first person narrative about life with her daughter, Carol, but it also contains unexpected wisdom in three additional sections of the book. The Foreword, the Introduction and the Afterword add significant history and detail that make this book complete.The Foreword, written by James A. Michener provides a detailed account about Pearl S. Buck’s humanitarian work that involved the launch of “Welcome House, a meticulously run orphanage for unadoptable Asian-American children, most of them fathered by American G.I.s.” The American soldiers had served in Japan and Korea during World War II. Buck made it her personal mission to find homes for these babies.

After having read the original edition of The Child Who Never Grew, Michener felt he gained a better understanding about what spurred Buck on in her humanitarian work with Welcome House, “… I now understood the secret of Pearl Buck’s drive to save damaged children. Most were less crippled mentally than her daughter, but each was disadvantaged in her or his own way.”The Introduction, written by Martha M. Jablow contains a historical time line that outlines the changing attitudes, beliefs and practises around people with developmental disabilities. The time line covered by Jablow stretches from a time in history where it was believed that mental disability was caused by evil spirits, to 1990 when legislation (Americans with Disabilities Act) was put in place to “bring down barriers and make workplaces more accessible to disabled individuals.” Jablow’s historical overview is detailed and informative.The Story itself is timeless. It is a “moving portrayal of parents’ conflicting emotions as they come to terms with a child’s limitations.” When Buck, “writes from her heart about her personal pain and struggle with her daughter Carol’s condition, her voice is universal. She speaks to all parents who have travelled the same road – or who are just embarking on that journey as they discover that their child has some form of developmental delay.” (Jablow)

Buck explains that she writes the story because she wants her daughter’s life to “be of use in her generation.” The story is written in 1950, a time when attitudes concerning people with developmental disabilities are slowly starting to shift. Although Buck says her daughter has grown past a point where changing attitudes will make much difference to her, Buck wants her daughter’s story to in some way help this movement.The Afterword is written by Janice C. Walsh, Carol’s sister. Janice feels that the title of the book is somewhat misleading. She explains that she was witness to Carol’s growth. She watched Carol “achieve her own potential”…at…”the Training School at Vineland”.
While Buck’s story tells of the emotional challenges experienced while parenting Carol, in the afterword we’re given a more detailed look at Carol’s personal interests and personality. Janice gives details of Carol’s accomplishments throughout her lifetime at the Training School in Vineland, New Jersey.This book touched me on many different levels. Not only could I relate on an emotional level with what Pearl Buck went through as a parent, but I also gained a vast amount of knowledge about the history around mental retardation. The Child Who Never Grew could easily stand alone and while I found the story authentic and relatable I feel the book is enriched by the addition of the three sections described above. I would definitely recommend this book to any parent raising a child with special needs. Buck’s emotional struggles are easily relatable. The book is rich with historical information that illustrates how far we’ve come as a society over the past few decades with regards to the acceptance of people with special needs. The Child Who Never Grew is an interesting read not to be missed.

What if you couldn't speak? Or use your hands? How would you prove you understand? That you can learn? That you matter? This American film follows three children with cerebral palsy struggling to be included in the public school system over two years. Watch the documentary and discuss with a professional and two parents of children who are non-verbal.